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Anyone suffer from inflammatory bowel disease&ITP

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11 years 2 months ago - 11 years 2 months ago #42824 by Dani2903
Anyone suffer from inflammatory bowel disease&ITP was created by Dani2903
Hi , I'm male 24 years old ,
Diagnosed with inflammatory bowel disease and ITP 7 months ago .
I have tried high dose of pred steroids,which I'm currently still on , weekly infusion of rituxan and currently get ivig every 3 weeks ,
Every time my platelets fall below 50 I experience flu like symptom get dehydrated and a flare up of coilitis,
I have undergone a bone marrow test last Friday as I'm in hospital AT the moment feeling rather miserable ,
Anyone know or have gone through any of this I would appreciate some feedback ,
I suppose I'm kind of nervous at the moment cos ive being feeling unwell for the last 6-7 months and I feel as the consultants are going around in circles with me.
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11 years 2 months ago #42831 by eklein
Replied by eklein on topic Anyone suffer from inflammatory bowel disease&ITP
Possibly the platelet drop and the IBD flare have the same cause rather than one causing the other. They are both autoimmune reactions.

Feel better soon...
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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11 years 2 months ago #42845 by Vdeutsch85
Replied by Vdeutsch85 on topic Anyone suffer from inflammatory bowel disease&ITP
Hang in there! Autoimmune diseases are not fun.
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11 years 2 months ago #42848 by ananta
Replied by ananta on topic Anyone suffer from inflammatory bowel disease&ITP
Dani,
Sorry you have IBD and ITP! My husband, who does not have ITP, had IBD. His experience is that the best thing you can do (when you get out of the hospital) is follow the SCD diet. He stayed strictly on the SCD diet for about 2 years. He gradually started feeling better and better. It is a tough diet to be on, but was well worth it for him. He found that after 1.5 years, he could eat more things without any bad reactions. Most Dr's will tell you that diet has nothing to do with IBD, IBS, crohn's etc. But that is the way they used to treat it before drugs became popular. Google it!
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11 years 2 months ago #42855 by Dani2903
Replied by Dani2903 on topic Anyone suffer from inflammatory bowel disease&ITP
Than you very much for all the kind responses
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11 years 2 months ago #42873 by GhostRider
Replied by GhostRider on topic Anyone suffer from inflammatory bowel disease&ITP
Do You know by any chance if they have checked your IgG Levels?

The reason I ask is because people with CVID commonly have bowel issues as well as other auto immune conditions.

I myself have ITP and CVID.

The other reason I ask was that you mentioned you have not been feeling well for the past 6 -7 months.

It all depends on the definition of feeling unwell, we talking constant upset stomachs, infections that kind of thing or is it just a general feeling of tiredness and feeling blah
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11 years 2 months ago #42875 by Dani2903
Replied by Dani2903 on topic Anyone suffer from inflammatory bowel disease&ITP
No I have not but thanks for making me aware of this ,

I have constant diarrhea, vomiting , fatigue, viruses,

It seems to get worse with every episode
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11 years 2 months ago #42951 by GhostRider
Replied by GhostRider on topic Anyone suffer from inflammatory bowel disease&ITP
Sorry for the late reply. Yeah I would get your Ig checked just to be on the safe side
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11 years 2 months ago #43010 by Rob16
Replied by Rob16 on topic Anyone suffer from inflammatory bowel disease&ITP
Ellen has symptoms of IBD but has not had it checked out. The symptoms run parallel with her low platelets, and go away when she takes steroids. I was hoping that her IBD would respond to rituximab after she starts treatment on Monday. However, research does not seem to support this conjecture. In fact, there is some indication that B-cell depletion may cause or exacerbate colitis.

Does anyone have experience with IBD and Rituxan?
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11 years 1 month ago #43478 by Dani2903
Replied by Dani2903 on topic Anyone suffer from inflammatory bowel disease&ITP
Hi rob, yes I have had 4 infusions of rituxan with no response , I'm booked in for a splenectony on the 13th of October , I'm not feeling very good every time my platelets fall below 50 my ibd is flaring up , my doctors are a bit puzzled I was thinkin of going to see a doctor that specialises in auto immune disorders because itp and ibd together are hard to treat as I have experienced ,
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11 years 1 month ago - 11 years 1 month ago #43479 by eklein
Replied by eklein on topic Anyone suffer from inflammatory bowel disease&ITP
Rob, my IBS was worse after Rituxan. I've improved my symptoms at least 80% over the last 5 years by following the FODMAPs diet. I don't know if the Rituxan was responsible for the worse symptoms, or I was maybe eating differently as I 'babied' myself when I was the sickest. Now that I know most of the foods that set me off I can see that for example the Hostess Cherry Pies I at during my infusion were making things much much worse for me.
Erica

Edited - sorry, big mistake - I have IBS not IBD.
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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10 years 11 months ago #45188 by Rob16
Replied by Rob16 on topic Anyone suffer from inflammatory bowel disease&ITP
As I earlier stated, Ellen has been experiencing symptoms of irritable bowel syndrome/ inflammatory bowel disease, predating the Rituxan treatment. The symptoms always disappear when she has to go on steroids, and reappear after. Her stool samples are unremarkable except for fecal lymphocytes, which could mean a lot of things, and she is scheduled to see a gastroenterologist next week.

We expect that she will undergo a colonoscopy with biopsies, and that she will need to take steroids beforehand to bring her platelets up to at least 50k. The steroids will make her symptoms go away, so I wonder if the colonoscopy will accurately reflect her condition. Catch-22
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10 years 10 months ago #45234 by Winnifred
Replied by Winnifred on topic Anyone suffer from inflammatory bowel disease&ITP
I have IBS not IBD so it doesn't matter if I have treatment or not. I do have periods of where it doesn't seem to be active and than without warning. Bam I am ugh what was I thinking should of avoided that! I should avoid fried and spicey and well take out. I do not because I'm a sucker for punishment.

What I have learned over the years is that autoimmune diseases do clump and many people will say one triggers the other. I believe something triggers your immune system and that triggers autoimmune diseases. So basically both can act up at the same time or depending on which one is triggered first will depend on which symptoms you get first.
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