Should i call it quits?

[cb323]

should i call it quits?

I need advice please. Long history of tummy problems with flares a couple of times a year. They usually last 4-5 days, treated for diverticulitis. This time it lasted for 7 months. I lost 45 lbs, watery diarrhea, some vomitting, severe abd pain, low grade fevers, dehydration. I just felt sick. I have had 2 normal colonocopies w/ biopsies, pill cam, small bowel study, tons of lab. All normal. Three CTs have shown narrowing in the small intestines. GI started me on Pentasa because he felt sure that it was Crohns. Nurse called today to say that biopsies were normal and to stay on meds and come in for follow-up in a month. I started feeling better a few weeks ago, just before GI started me on Pentasa. Should I quit looking for an answer to why this happened and just be glad that it seems to be over? Is it normal to lose weight with IBS? I've never been able to lose weight when I tried! I'm happy that test are normal but feel like I will have a flare again. I don't want to take strong meds if i dont have Crohns. Not sure what to do. Thanks for your advice. Hope all are doing well.

 

[Cat-a-Tonic]

Hi CB, sorry to hear that all of your test results haven't found anything so far. I've experienced the same thing and it's definitely frustrating! But you can't give up. You know you're ill, you said yourself that you will likely have more flares in the future. You can't just deal with flares without answers or appropriate treatment.

I'm glad they're trying Pentasa on you. My advice would be to stick with it. It's a VERY mild medication (so mild that it might not help very much if you're currently in a flare - it's more for maintaining remission than for stopping flares). I'm personally on Asacol which is a very similar med to Pentasa and I haven't had any troubles with it. Both are in the mesalamine (5-ASA) family. They pose no risk of dependency, and low chance of mild side effects - being on Pentasa shouldn't cause you any problems and could help, so personally I'd stick with it.

As for you other question, no - you do not lose weight with IBS. It sounds like you've lost a significant amount too (I'm assuming your doctor knows this?). Fevers are also not part of IBS. Weight loss, fever, nocturnal diarrhea (having to get up in the night to "go"), and blood in the stool are all red flag symptoms indicating that something more than IBS is going on. Please keep fighting for answers. I know it's difficult, frustrating, and exhausting - but you know you're ill and you need and deserve answers. Hang in there! We're here for you and we understand what you're going through.

 

[cb323]

Thank you so much for replying. You are right about how frustrating this has been. The doctor seems so certain of crohns but nothing is showing up. He is concerned about the weight loss. I have only had nocturnal diarrhea a few times and never any blood. I'm feeling better right now. I'm just anxious to hear what my GI suggest at my follow up appt. It makes me feel so much better to talk to people that understand what I am going through. Thanks again.

 

[penny]

Thank you so much for replying. You are right about how frustrating this has been. The doctor seems so certain of crohns but nothing is showing up. He is concerned about the weight loss. I have only had nocturnal diarrhea a few times and never any blood. I'm feeling better right now. I'm just anxious to hear what my GI suggest at my follow up appt. It makes me feel so much better to talk to people that understand what I am going through. Thanks again.

hello there dont give up hang on in there .this is a great place to talk to others who know what you are goin through.ive found it so helpful and not long joined myself .great to chat to people who dont judge you they understand exactly how you feeling good look with your follow up appointment

 

[allieinwonder]

I agree with the others, don't give up. If your doc is sure it is crohns, and he has you on meds for it, and they have helped, I think you should stick with it. I am another member on here who has had all normal tests (GI anyway)...1 colonoscopy, 2 upper endoscopies, pill cam, CT scan, and a small bowel follow through. I understand how frustrating it can be, but it sounds like you have a great doctor who knows that just because your tests are normal doesn't mean you aren't sick. One of my GP's explained it to me that crohns, at the beginning, can be REALLY hard to catch on a test. The flares can be so short that the test might not be scheduled during a flare, and then it won't find evidence because the damage it did was so minor that it healed with no scars. Patience is key!