Question:

Monica –  Read your reply Lori on Surgery Yes or No. … wasn’t written to me, but I’m in pretty much her situation and found your reply very informative.  Thanks for posting it to the group. I’ve about decided to put off surgery also, as it is so often unsuccessful, or repetitive.  I’m just not at that point yet.  What did you mean by trying "feeding"??   It’s never been mentioned to me; either because my problem (partial obstruction at terminal ilium/and fistulas) doesn’t respond to it?? or he’s just not knowledgeable? What did you mean, when/why and how is it done? Thanks for your help! Carla

Response:

BTW, if you must have the surgery, there are surgeons out there that are doing it laparoscopic.  And it works wonderful in most cases. … Very interesting. I say the above since one thing that I think nobody has mentioned (I think) is the recuperation time from the surgery.  It is MAJOR abdominal surgery, unless done laparoscopic,

Any time you are having pieces of your gut removed, it is major surgery and not much fun… still, I have had a hemi-colectomy done laparoscopically, and was able to be back at work, lifting 30+lbs. in a month.  One thing to remember, a surgeon can’t tell exactly what s/he will find when they do open you up.  My surgeon told me before the surgery that he would try to do it that way, but if he needed to he would make the larger inscision.  Surgery can work wonders, but it is a hard decision to make.  I felt rather lucky that I had an intestinal perforation, which took the decision out of my hands, but I think I would have had it done within the next few months anyway.  There comes a time when you are so limited that the gamble is worth the odds.  As my gastroenterologist said– "Even if it comes back in a few years, you’ve had those years symptom free". If your quality of life is reduced to a great extent, I say go for the surgery.  For me, it has paid off…it might for you too.

Response:

Lori Anne Lanigan wrote – Hide quoted text — Show quoted text – Greetings everyone, I was diagnosed with Crohn’s disease when I was 21 years old, I am now 27. I have what I consider to be a mild case of Crohn’s.  My biggest problem up to now has been swelling of the joints, especially the knees and ankles, and almost constant diarrhea.  As for medication, Salofalk has been my drug since the beginning.  A couple of months ago, my doctor figured it was time to put me in remission.  No more anemia, no more joint problems and no more going to the bathroom all the time.  Sounded good to me, so we tried a new drug called 6-MP.  It unfortunately attacked my bone marrow and lowered my white blood cell count to practically nothing.  I had to be hospitalized. Anyway, ever since the 6-MP disaster, I’ve had 3 terminal ileum obstructions and now my doctor feels I should have surgery.  I met with a surgeon and quite frankly I’m not crazy about the odds.   I have two questions I would appreciate some info on: 1) Has anyone had surgery of the terminal ileum and how was your experience?  Do you recommend it? 2) Do you know of another alternative to surgery?   For example, colonogopy or perhaps seeing a naturopath?  What do you think? Any advice you could give me would be great, ’cause I feel great at the moment.  I’m on 10mm of prednisone a day, combined with 3 tablets of Salofalk and I’m doing fantastic.  The problem is what will happen when I stop the prednisone, hopefully nothing will change.   Talk to you soon, Lori Anne

Hi Lori Anne, I’m so sorry you are going through this.  It reminds myself of one night, many years ago, when I was sitting on the floor, with my back on the bed, my tummy held by my arms, and I was crying and asking God for an answer on whether to go in for the same surgery you are contemplating right now. There was (unfortunately) no internet in those days.  I had one phone conversation with a woman that had had the surgery and was very happy to have done it.  I had called CCFA and she returned my call. Since that first surgery, I had to go through two more in order to get it finally under control.  It took only a few months after the first surgery for me to get inflamed again and have another constriction.  It usually happens again and again at the point of the anestemosis.   I must add that I was at a major teaching hospital, under the care of some of the most knowledgeable GI’s and surgeons in the country. I still needed two more surgeries in the next 3-4 years. The last two were done by the most wonderful surgeon.  I believe (and a lot of other people too) that he is one of the best in the nation.  He made a completely new connection at the anestemosis, leaving two openings from the small bowel into (what was by  then left of ) the colon. I haven’t had any blockages since.   I do suffer now from small bowel.  And I had my gallbladder removed. The last too surgeries though were done as a last resort.  And I mean LAST resort.  The surgeon stayed watching me around the clock so as not to go in unless it was right before it was a real emergency.  In the meanwhile they were trying to unload my small bowel pumping the contents, and all the accumulated gas, trying to avoid a rupture. Finally, when they took me for one last x-ray with contrast stuff, the pressure was so much from the contrast,  they rushed me to surgery, where I had to sign the consent in the middle of the most awful pain. I must say that emergency surgery is not fun, but then at the same time, the aftermath of surgery is not very easy either, as you by now realize from all the responses you have got. By the way, you got some wonderful advice in this place.  I don’t think any of them is out of place.  And as I see it, the majority is voting for a no-surgery. (at least not right now). I agree with the majority. Other crisis I’ve gone through, they have done the feeding thing, and it has worked.  I’m surprised they haven’t done it with you.  ESPECIALLY since you can still eat/drink.  I couldn’t, so they put in the Hickman Catheter, directly to a major artery (vein?) and hooked me up with TPN.  You can go home with it if necessary. I guess what I’m trying to say is that I get the feeling, like many other in this group, that your doctor has not tried everything possible, leaving surgery as a last resort, like it should be. BTW, if you must have the surgery, there are surgeons out there that are doing it laparoscopic.  And it works wonderful in most cases.  If you need more info    e-mail me, since I once recorded a program on cable of the actual surgery.  Very interesting. I say the above since one thing that I think nobody has mentioned (I think) is the recuperation time from the surgery.  It is MAJOR abdominal surgery, unless done laparoscopic, and it is very, very painful, and not easy to recuperate from.  For the doctors it’s easy , so don’t go so much by what they tell you as recuperation.  My experience proves that they ALWAYS underestimate the pain and suffering of the post-op. I’ll be happy to share with you any other stories from my 25+ years struggle with this disease, which unfortunately  is not cured by surgery like UC is.  Just e-mail me, and I’ll be happy to respond. I’ll be praying for you and wish you the best,  and let us know how you are doing. Hugs, Monica

Response:

Hi Kirk! Thanks for your reply.  I would like to know more about your case.  You say that your crohns experience sounds similar to mine so I’d like to compare a little.  I know that I’ve been quite fortunate over the past 6 years, maybe with these recent three blockages my luck is running out.  I’ve heard a lot of other people’s cases and mine is nothing or at least I feel it’s nothing compared to some.  Tell me, do you know if it’s possible to recover from these blockages or do you pretty much eventually, sooner or later, have to operate.  I asked this to the surgeon and she said that if the walls of the intestine are thick that medication won’t make it go away.  If that’s true than something is going have to be done.   Well it’s like I said, I’m doing great right now so it’s hard to think of all this unpleasantness but I must.  So, please feel free to tell me your story.  If you’re interested I could go more into detail into mine.   Take care of yourself Kirk, Lori Anne

Response:

Dear Carla, That guy you went to has absolutely no idea what he’s talking about. No one knows yet what causes IBD, although at least one gene marker for Crohn’s was discovered last year. And there is no cure, no matter what any quack tries to tell  you. There is a connection between the gall bladder and IBD, in that people with Crohn’s can develop bile duct problems.  But having no gall bladder does not CAUSE Crohn’s.  My mother had her gall bladder removed many years ago, and does not have Crohn’s.  I still have my gall bladder, and I do have Crohn’s. So don’t worry about it, just have your gastroenterologist keep an eye on it. Good luck! Melinda – Hide quoted text — Show quoted text – Like Leon Milberg suggests in his response to you, I agree that a Strictureplasty is a good alternative to a resection.  A resection results in many unpleasant things.  But most of all, it does not guarantee that the disease will be eradicated.  If obstructions are your problem, ask your doctor about the possibility of a Strictureplasty as opposed to a resection. I wish you luck. Bob Rosenthal Is a strictureplasty possible at the terminal ileum?  I’m in Lori’s predicament … at that point of deciding whether or not to have surgery … I’m not at any crisis, just having some disruption of life.  But that’s another story and not part of this question. A "doctor" (quack?) suggested my problems with CD, which he termed "easy to treat" (I thought he was a chiropractor and I went to him for a kinked back only to find he’s some ultra-alternative whacko … no offense meant;  I’m not against using alternative med; I just object to this particular guy) ANYWAY,  after saying how easy it was to cure CD, and then finding out I had had my gall bladder removed 20 yrs ago (onset of my CD about 15 yrs ago from most visible symptoms, tho I didn’t get DX’d till about 5 yrs ago) … ANYWAY, he said my not having my gall bladder is what caused my CD.   ANYONE EVER HEAR OF THIS BEFORE?  COULD there conceivably be any connection between the 2?  And if so, does that shed any light on treatment options?? Thanks for ANY input!! (email welcome) Carla

Melinda

Response:

- Hide quoted text — Show quoted text – Is a strictureplasty possible at the terminal ileum?  I’m in Lori’s predicament … at that point of deciding whether or not to have surgery … I’m not at any crisis, just having some disruption of life.  But that’s another story and not part of this question. A "doctor" (quack?) suggested my problems with CD, which he termed "easy to treat" (I thought he was a chiropractor and I went to him for a kinked back only to find he’s some ultra-alternative whacko … no offense meant;  I’m not against using alternative med; I just object to this particular guy) ANYWAY,  after saying how easy it was to cure CD, and then finding out I had had my gall bladder removed 20 yrs ago (onset of my CD about 15 yrs ago from most visible symptoms, tho I didn’t get DX’d till about 5 yrs ago) … ANYWAY,  he said my not having my gall bladder is what caused my CD. ANYONE EVER HEAR OF THIS BEFORE?  COULD there conceivably be any connection between the 2?  And if so, does that shed any light on treatment options?? Thanks for ANY input!! (email welcome) Carla

Utter nonsense! Just ask in ths NG how many Crohn’s sufferers still have their gall bladder. This one knows nothing about it, and is DANGEROUS. As my grandpa used to say, "It’s not what you don’t know that will hurt you. It’s what you know that ain’t so!" — Larry

Response:

Dear Lori: After having two surgeries, one to remove about 50 cm. of diseased ilium, and another to repair the scarring left by the first surgery, I can only suggest to resort to surgery as your last option.  However, while it is difficult to die from Crohns, you can die from obstructed bowel if they are left untreated.  Usually, surgery is the only option. Like Leon Milberg suggests in his response to you, I agree that a Strictureplasty is a good alternative to a resection.  A resection results in many unpleasant things.  But most of all, it does not guarantee that the disease will be eradicated.  If obstructions are your problem, ask your doctor about the possibility of a Strictureplasty as opposed to a resection. I wish you luck. Bob Rosenthal

Response:

Like Leon Milberg suggests in his response to you, I agree that a Strictureplasty is a good alternative to a resection.  A resection results in many unpleasant things.  But most of all, it does not guarantee that the disease will be eradicated.  If obstructions are your problem, ask your doctor about the possibility of a Strictureplasty as opposed to a resection. I wish you luck. Bob Rosenthal

Is a strictureplasty possible at the terminal ileum?  I’m in Lori’s predicament … at that point of deciding whether or not to have surgery … I’m not at any crisis, just having some disruption of life.  But that’s another story and not part of this question. A "doctor" (quack?) suggested my problems with CD, which he termed "easy to treat" (I thought he was a chiropractor and I went to him for a kinked back only to find he’s some ultra-alternative whacko … no offense meant;  I’m not against using alternative med; I just object to this particular guy) ANYWAY,  after saying how easy it was to cure CD, and then finding out I had had my gall bladder removed 20 yrs ago (onset of my CD about 15 yrs ago from most visible symptoms, tho I didn’t get DX’d till about 5 yrs ago) … ANYWAY,  he said my not having my gall bladder is what caused my CD.   ANYONE EVER HEAR OF THIS BEFORE?  COULD there conceivably be any connection between the 2?  And if so, does that shed any light on treatment options?? Thanks for ANY input!! (email welcome) Carla

Response:

– Hide quoted text — Show quoted text – Greetings everyone, I was diagnosed with Crohn’s disease when I was 21 years old, I am now 27. I have what I consider to be a mild case of Crohn’s.  My biggest problem up to now has been swelling of the joints, especially the knees and ankles, and almost constant diarrhea.  As for medication, Salofalk has been my drug since the beginning.  A couple of months ago, my doctor figured it was time to put me in remission.  No more anemia, no more joint problems and no more going to the bathroom all the time.  Sounded good to me, so we tried a new drug called 6-MP.  It unfortunately attacked my bone marrow and lowered my white blood cell count to practically nothing.  I had to be hospitalized. Anyway, ever since the 6-MP disaster, I’ve had 3 terminal ileum obstructions and now my doctor feels I should have surgery.  I met with a surgeon and quite frankly I’m not crazy about the odds. I have two questions I would appreciate some info on: 1) Has anyone had surgery of the terminal ileum and how was your experience?  Do you recommend it? 2) Do you know of another alternative to surgery?   For example, colonogopy or perhaps seeing a naturopath?  What do you think? Any advice you could give me would be great, ’cause I feel great at the moment.  I’m on 10mm of prednisone a day, combined with 3 tablets of Salofalk and I’m doing fantastic.  The problem is what will happen when I stop the prednisone, hopefully nothing will change. Talk to you soon, Lori Anne

Hello Lori Anne, Your situation sounds an awfull lot like mine a couple of years ago. I’ve been diagnosed with Chrohn’s for about 15 years, and other than the odd minor flare, carried on rather nicely. I was on 10 to 20 mg of prednisone, along with some codiene to control the runs, and everything was A-OK. Last fall, I had a flare that was just terrible – nothing would bring it under control. I was hospitalized 3 times, missed all kinds of work, etc etc.. Eventually, I ended up at a large University hospital, under the care of an excellent specialist. To make a very, very long story short, it turned out the the medications I was taking over the years (especially the prednisone) had caused all kinds of very serious problems – some worse than the chrohns… I ended up having exactly the surgury you are contemplating. My experience has been a dramatic improvement. I’ve never felt better…The surgury was pretty tough to recover from though. The point of this is that the meds you are taking most likely are doing damage that will come to light down the road. I will have life-long repercussions from taking the meds and putting off the surgury so long. In my view, surgury of this sort is short term pain for long term gain. It should be noted that each situation is unique, but that’s my experience. If you would like more details (I know I’ve been a little vague here), please feel free to EMail me… I’d be more than happy if I could spare you the problems I have experienced… Warmest Regards, Kirk Muter P.S.: I tried a naturopath 4 or 5 years ago…Lots of $$$$ – no relief…

Response:

– Hide quoted text — Show quoted text -Greetings everyone, I was diagnosed with Crohn’s disease when I was 21 years old, I am now 27. I have what I consider to be a mild case of Crohn’s.  My biggest problem up to now has been swelling of the joints, especially the knees and ankles, and almost constant diarrhea.  As for medication, Salofalk has been my drug since the beginning.  A couple of months ago, my doctor figured it was time to put me in remission.  No more anemia, no more joint problems and no more going to the bathroom all the time.  Sounded good to me, so we tried a new drug called 6-MP.  It unfortunately attacked my bone marrow and lowered my white blood cell count to practically nothing.  I had to be hospitalized. Anyway, ever since the 6-MP disaster, I’ve had 3 terminal ileum obstructions and now my doctor feels I should have surgery.  I met with a surgeon and quite frankly I’m not crazy about the odds.   I have two questions I would appreciate some info on: 1) Has anyone had surgery of the terminal ileum and how was your experience?  Do you recommend it? 2) Do you know of another alternative to surgery?   For example, colonogopy or perhaps seeing a naturopath?  What do you think? Any advice you could give me would be great, ’cause I feel great at the moment.  I’m on 10mm of prednisone a day, combined with 3 tablets of Salofalk and I’m doing fantastic.  The problem is what will happen when I stop the prednisone, hopefully nothing will change.   Talk to you soon, Lori Anne

Hi LoriAnne, As you have likely noticed, one of the major problems with surgery is that it by no means speaks to what is actually irritating the digestive tract and causing the inflamation… thus the likelyhood of future surgeries. At risk of being flamed again, I’ll venture some possibly helpfull information on sorting out the CAUSE (as opposed to suppressing (drugs) or "removing" (surgery) the SYMPTOMS). Eliminate ALL food for a short period of time (’till your symptoms disappear) and carefully re-introduce simple foods. Several clinical studies have shown quite clearly that in the majority of Crohns patients, a "fast" on an Elemental Nutriet Formula will induce remission. Although most ENFs need to be tube-fed there is an alternative that is quite palatable when mixed with water and is specifically desinged around the needs of those with food triggerd inflamitory bowel diseases. ALERT * ALERT * ALERT –  The following should be looked upon as having Commecial Content.         Dr. Stephen Gislason MD, of Vancouver, Canada provides a commercial ENF that his company calls ENFood. The product is designed to *totally* replace all food, it’s made of mostly pharmacy grade vitamins, minerals, sugars, and amino-acids and is classed by the FDA as a true "medical food". ENFood C1 is a complete meal replacement formula and can be used to nutritional support a food holiday.  The logic is compelling. If food problems are suspected of causing any illness, a trial of clearing on an ENFood would confirm or deny food involvement in 10-14 days. ENFood can supply complete nutrition or can be combined with a few basic foods that tend to be well tolerated. Some people are motivated to fast using juices, herbs, and/or nutritional supplements. ENFood provides complete nutritional support for fasting and should replace all other substances. Teahon et al reported on 10 years experience with an elemental diet (Vivonex) in Crohn’s patients. They treated 113 patients with Vivonex and achieved successful diet remission in 85%. Patients with ilietis did better than those with colonic or perianal disease. They did not have a program for reintroducing foods to establish tolerance and did not attempt maintenance with food control. They noted a tendency to relapse when food was reintroduced. Frieri et al reported on food allergic investigation in 11 Crohn’s patients; Their premise was that "Interaction between food antigens and the immune system may play a role in part in the pathogenesis of inflammatory bowel disease. " Jones et al showed that careful food reintroduction to patients with Crohn’s disease, following remission by fasting was successful in 51 of 77 patients in an uncontrolled study and 7 of 10 patients in a controlled study on an "exclusion diet". The exclusion diet avoided high risk foods – milk and cereal grains – and foods thought to be unlikely to provoke symptoms were introduced one per day. Any food that provoked symptoms in a patient was eliminated from the patient’s diet.  Jones stated "No current medical treatment is totally effective for Crohn’s disease. Despite reports of Crohn’s disease being related to intolerance of individual foods, specific dietary approaches to the management of this condition have not been developed, and dietary advice to these patients has been of a very general nature. Our findings, however, suggest that dietary manipulation may be a practical strategy for the long-term management of the condition in many patients…Both TPN and an elemental diet are valuable in inducing remission in acute Crohn’s disease." Rirodan et al evaluated 136 Crohn’s patients on an elemental diet Thirty-one percent did not continue with the elemental diet for 14 days, while 94% of the remaining 93 patients achieved remission and were randomly assigned steroids or the diet. There was a median length of remission of 3.8 months in the corticosteroid group and 7.5 months on diet. Relapse rates at 2 years were 79% and 62%, respectively.. Food intolerances were predominantly to cereals, dairy products and yeast; food causing symptoms when reintroduced were corn (7), wheat, milk, yeast (6), eggs, potato, rye, coffee (4), apples, mushrooms, oats and chocolate (3). Twenty-six patients were intolerant of more than 3 foods. Increase intestinal permeability in Crohn’s disease may promote the local disease and also provide the route for food antigen entry. Hollander et al demonstrated increased Crohn’s disease patients and their relatives using polyethylene glycol 400 as a probe – this is a mixture of linear polymers with an average molecular weight of 414 daltons. They stated: "Our data clearly supports the hypothesis that an intestinal permeability defect is an etiologic factor in Crohn’s disease. Increased permeability has been demonstrated in Crohn’s patients in remission using the lactulose-mannitol test.; 37 of 72 patients showed increased permeability and 86% of this group relapsed within 1 year. Increased intestinal permeability in Crohn’s disease may be the primary defect in producing both the local disease and systemic consequences. Olaison reviewed oral absorption studies done to 1990. His conclusion; "… studies of intestinal permeability in Crohn’s disease demonstrate a disturbed intestinal permeability in various parts of the intestine. The findings indicate a general leakiness of the intestinal mucosa, and the fact that this leakiness is not dependent on the presence of inflammation accords the possibility that increased intestinal permeability may be a primary expression of Crohn’s disease and a possible pathogenic factor." The following references may help… Jones A.V., McLaughlin P. Shorthouse M. et al. Food intolerance: a major factor in the pathogenesis of irritable bowel syndrome. Lancet 1982;2:1115 Jones Al, Shorthouse M., Workman E. et al. Food intolerance and irritable bowel. Lancet 1983:2:633 Voigt AJ, Echave V, Feller JH, et al. Experience with elemental diet in the treatment of inflammatory bowel disease. Is this primary therapy? Arch Surg 1973;107:329-33 Rocchio MA et al Use of Chemically Defined diets in the Management of Patients With Acute Inflammatory Bowel Disease. Am Jour Surg.1974;127:469-475 O’Morain C, Segal AW, Levi AJ et al Elemental diet as a primary treatment of acute Crohn’s Disease; a controlled trial. Br. Med J 1984:288:1859-62 Morin Cl et al Continuous elemental enteral alimentation in the treatment of children and adolescents with Crohn’s disease. J Parent Nutr 1982;6:194-199 Saverymuttu S, Hodgson HJF, Chadwick VS. Controlled trial comparing prednisolone with an antibiotic in active Crohn’s disease. Gut 1984:26:994-998 Teahon K., Bjarnason I., Pearson A.J., Levi A.J. Ten years experience with an elemental diet in the management of Crohn’s disease. Gut,1990,31;1133-1137 Frieri et al. Preliminary investigation on humoral and cellular immune responses to selected food proteins in patients with Crohn’s disease. Ann Allergy 1990;64:345-351 Jones VA, Workman E, Freeman AH et al. Crohn’s Disease: Maintenance of Remission by Diet. Lancet 1985; July27:177-180. Hollander D et al Increased Intestinal Permeability in Patients with Crohn’s Disease and Their Relatives. Ann Int Med. 1986;105:883-885 Wyatt J, et al. Intestinal Permeability and the Prediction of Relapse in Crohn’s Disease. Lancet 1993;341:1437-1439 Olaison G. Abnormal Intestinal permeability in Crohn’s Disease. Scand J Gastoenterol 1990;25: 312-328 ‘Treatment of Active Crohn’s Disease By Exclusion Diet- East Anglian Multicenter Controlled Trial’, Riordan,A.M,et al Lancet,November 6, 1993;342:1131-1134. (Address Dr. J.0. Hunter, Gastroenterology Research Unit, Addenbrooke’s Hospital Cambridge CB2 2QQ, United Kingdom) In short LoriAnne, it can’t hurt to try replacing food with a good ENF and trying to ascertain whether your symptoms are controlable by simply removing the foods that cause symptoms on re-introduction. Hope this helps… L. Withers 1-7900 River Road Richmond, B.C. Canada, V6X 1X7 Ph:   (604)270-8474 Fax:  (604)270-1147 www.liv-n-well.com

Response:

– Hide quoted text — Show quoted text -Greetings everyone, I was diagnosed with Crohn’s disease when I was 21 years old, I am now 27. I have what I consider to be a mild case of Crohn’s.  My biggest problem up to now has been swelling of the joints, especially the knees and ankles, and almost constant diarrhea.  As for medication, Salofalk has been my drug since the beginning.  A couple of months ago, my doctor figured it was time to put me in remission.  No more anemia, no more joint problems and no more going to the bathroom all the time.  Sounded good to me, so we tried a new drug called 6-MP.  It unfortunately attacked my bone marrow and lowered my white blood cell count to practically nothing.  I had to be hospitalized. Anyway, ever since the 6-MP disaster, I’ve had 3 terminal ileum obstructions and now my doctor feels I should have surgery.  I met with a surgeon and quite frankly I’m not crazy about the odds.   I have two questions I would appreciate some info on: 1) Has anyone had surgery of the terminal ileum and how was your experience?  Do you recommend it? 2) Do you know of another alternative to surgery?   For example, colonogopy or perhaps seeing a naturopath?  What do you think? Any advice you could give me would be great, ’cause I feel great at the moment.  I’m on 10mm of prednisone a day, combined with 3 tablets of Salofalk and I’m doing fantastic.  The problem is what will happen when I stop the prednisone, hopefully nothing will change.   Talk to you soon, Lori Anne

Dear Lori Anne: Since your obstructions have been at the terminal ilium I would try strictureplasty prior to invasive surgery. This can be dome via colonoscopy. If you are sedated properly during the procedure it is painless. I would also attempt in conjunction with your prednisone another immunosuppressant. Just because you couldn’t tolerate 6-MP doesn’t mean you can’t tolerate another. I tried 6-MP, Methotrexate, Methotrexate with Cyclosporin, and now Immuran which is working great. If your doctor is diligent and you are consistent with your daily meds and with your initially frequent blood test, the drug and dosage can be monitored very safely. Either you or your doctor was not as thorough with the drug monitoring to have you hospitalized. The dose can be adjusted  prior to any big decreases in white count. I had weekly blood tests which tapered to monthly. With any dose change I went back to weekly tests. I am also very conscientious about taking my pills very regularly. I had a scarred stricture at my anastomosis (the surgical connection between the ilium and the large bowel). I have had the surgery and I also have CD. Once they start removing diseased intestine with CD it is a never ending prospect. Nearly 90% of CD patients that have had surgery have to have another in their lifetime. Along with removing the small intestine there are daily problems you must contend with. The first is bile absorbtion. It is hampered with a ilium resection. Bile causes diarrhea. The solution is more drugs like colestid. Additionally you become prone to kidney and gall bladder problems. Lastly and the most important reason is that there is no guarantee you will be free from the disease at all. Although some CD patients have some reprieve, I had none. The disease was back before my stitches were removed. I also had complications associated with the wound (stitch infections). Remember you have slow healing with prednisone. When there is no inflammation the strictures do not come back. I had the stritureplasty done yearly in the past (3 times). It has now been three years. Since my CD is in control with Immuran the stricture has not been a problem at all for a long time. I have so far, avoided surgery. I too was advised several years ago that I needed surgery. After my first experience I said that I would try several non-invasive tactics prior to agreeing to the surgery. As you can see from adding up the time, I have avoided a second surgery for over 6 years from when I was advised to have it. Lastly be sure you have a doctor that is experienced at strictureplasty. Do you have a competent gastroenterologist (some how I doubt it if your white count got you hospitalized)? Some can actually make a vertical incision in the scarred tissue to  assist the strictureplasty. An inexperienced doctor cannot do this as they risk perforating the bowels which would lead to immediate surgery. If you have more questions feel free to email me. Best of luck and health to you.

Response:

to lori ann your question about surgery is understandable.  so far i i had surgery 3 times  1st and last were real bummers 2nd i got alone great.  only problem after last  2 surgery i only made it 6-8 month before a new blockage.  for some reason i  get alone well with my GI, i sometimes think it due to him describing me as a  real challenge to him as a patience.  the reason i said all this was because  of my trust in him as a doc i tend to let him practice new treatments on me.  my last blockage was about 6 months ago instead of surgery he did a colonogopy  (sp) on me found the blockage and opened it up with a laser were he made cuts  up down right and left.  it worked great.  i know that this may not be able to  be done all the time but better to see if it can first before agreeing to  surgery.  by the way went home about and hour after the procedure and have  been open  for about 8 mounth. next obsturtion this will be our first option.  i would talk with my GI about this before agreeing to be cut on.  good luck  and i pray this may be an option for you.   ps i’ve had 10 obstuction with only 3 surgeries one other way to good would be  the ballon prcedure only it never lasted as long for me rod

Response:

Greetings everyone, I was diagnosed with Crohn’s disease when I was 21 years old, I am now 27. I have what I consider to be a mild case of Crohn’s.  My biggest problem up to now has been swelling of the joints, especially the knees and ankles, and almost constant diarrhea.  As for medication, Salofalk has been my drug since the beginning.  A couple of months ago, my doctor figured it was time to put me in remission.  No more anemia, no more joint problems and no more going to the bathroom all the time.  Sounded good to me, so we tried a new drug called 6-MP.  It unfortunately attacked my bone marrow and lowered my white blood cell count to practically nothing.  I had to be hospitalized. Anyway, ever since the 6-MP disaster, I’ve had 3 terminal ileum obstructions and now my doctor feels I should have surgery.  I met with a surgeon and quite frankly I’m not crazy about the odds.   I have two questions I would appreciate some info on: 1) Has anyone had surgery of the terminal ileum and how was your experience?  Do you recommend it? 2) Do you know of another alternative to surgery?   For example, colonogopy or perhaps seeing a naturopath?  What do you think? Any advice you could give me would be great, ’cause I feel great at the moment.  I’m on 10mm of prednisone a day, combined with 3 tablets of Salofalk and I’m doing fantastic.  The problem is what will happen when I stop the prednisone, hopefully nothing will change.   Talk to you soon, Lori Anne

Response:

Lori Anne: Speaking for myself(and probably others having gone the surgical route)I’d have to say that it is indeed a pretty tough decision. Undoubtedly you know about the recurrence probability already.  To that you have to consider contending with bile salt diarrhea due to the change in your "plumbing".  And though it doesn’t last forever(the first time for me lasted about seven or eight months, now I’m into my sixth month), it’s still a "pain in the butt"(literally and figuratively)requiring medications like questran or colestid which hopefully keep damage to a minimum.  On the other hand, you’d do yourself a real disservice by staying on prednisone for a long time. I realize I haven’t advised one way or another. When you have all the facts at hand, hopefully you can then make the right decision. Mark Mandell

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